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Age and Ageing

Oxford University Press (OUP)

Preprints posted in the last 90 days, ranked by how well they match Age and Ageing's content profile, based on 27 papers previously published here. The average preprint has a 0.02% match score for this journal, so anything above that is already an above-average fit.

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Emergency dementia crisis care: Exploring health care staff views on crisis care optimisation across emergency services in England

Mirea Conley, E.; Bell, G.; Fountain, J.; Cadar, D.; Tabet, N.; Bosco, A.

2026-06-09 psychiatry and clinical psychology 10.64898/2026.06.08.26355155 medRxiv
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Background: In the UK, over 36 million contacts are made annually by people living with dementia (PLWD) to either primary or secondary community mental health services. As dementia progresses, PLWD may experience increased distress and resort to 999 calls for an ambulance, which may in turn result in conveyance to Accident & Emergency (A&E). Nearly 1 million A&E attendances are made by PLWD. This trend is set to rise sharply as the prevalence rates of dementia increase over time and as the condition progresses, with associated healthcare costs impacting overall care delivery. This may lead to reduced resource allocation for dementia emergency services, negatively affecting the experiences of both providers and service users. Aim(s): To explore ways to improve access and quality of care to emergency crisis care for PLWD from the perspective of healthcare staff providing this type of support. Methods: This qualitative study explored (1) the experiences, resources, and needs of healthcare professionals in emergency and community settings to support access for PLWD, and (2) the mechanisms influencing dementia crisis response. The COREQ Checklist was used to improve transparency, credibility, and reproducibility. Inter-rater reliability was calculated. PPIE contributors co-developed recommendations for healthcare professionals, and study findings informed a comic-based dissemination resource shared with third-sector organisations to support community awareness and engagement. Results: Fifteen interviews were held with emergency services staff. Inter-rater reliability was substantial between two raters (k = 0.62). Four overarching themes, with associated subthemes, were identified relating to crisis care delivery, barriers to effective response, and strategies employed to address these challenges. Additional themes captured decision-making processes at key points in the care pathway, including initial crisis response, during intervention, and at discharge from emergency and community services. Decision-making was characterised by the need to balance patient safety with autonomy in determining care in the best interests of PLWD and their informal carers. Discussion: This exploratory study reveals frontline staff perspectives on challenges and actionable strategies for dementia crisis care. Findings support targeted service improvements, cross-sector collaboration, and co-produced resources to enhance outcomes for PLWD and their informal carers.

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Ethnic and Socioeconomic Inequalities in Health and Social Care Utilisation Among People with Dementia: A Population-Based Study

Mathlin, G.; Cooper, C.; Teoh, L.; Mukadam, N.; Banerjee, S.; Birks, Y.; Demnitz-King, H.; Hunter, R.

2026-06-08 psychiatry and clinical psychology 10.64898/2026.06.04.26354916 medRxiv
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Background: People affected by dementia experience intersecting care inequalities. We explored relationships between ethnicity and health and social care resource use among people with dementia in an ethnically diverse urban region. Methods: We conducted a retrospective observational cohort study using Discover-NOW, including patients with dementia between 1.4.2015 and 1.4.2025. We calculated ethnic density as the percentage of the Middle Layer Super Output Area (SOA) population self-identifying with the same ethnic group. Regression models, clustered by Local SOA, tested whether ethnic density moderated relationships between ethnicity and primary care, outpatient, inpatient, emergency and social care service use, controlling for sociodemographic characteristics, deprivation, comorbidities and time of diagnosis. Findings: We included 30,704 people with dementia. People from Black and Mixed ethnic groups used more primary care, and those from Asian ethnic groups less primary and secondary care, than White ethnic groups. Rates of local authority social care packages were similar across ethnic groups. High ethnic density predicted fewer GP consultations in Black ethnic groups, but more in South Asian groups. Interpretation: Among Black ethnic groups, primary care use was relatively high, especially in areas of low ethnic density, perhaps reflecting greater needs among communities at risk of racism and isolation. The trend towards increased primary care use among South Asian people in areas of higher ethnic density may reflect communities mitigating help-seeking hesitancy related to cultural and language barriers. Greater care integration could reduce care inequalities among minority ethnic communities who may experience fewer barriers to social relative to health care.

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Pre-Dementia Indicators and Multidomain Vulnerabilities: Insights from AD8 Screening in Older Chinese Speaking Adults

You, W.; Koo, F. K.; Cheng, Y.; Huang, J.; Huang, H.; Li, M.; Sevastidis, J.; Chang, H.-C.

2026-04-13 geriatric medicine 10.64898/2026.04.08.26350424 medRxiv
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BackgroundEarly recognition of dementia-related changes is critical for timely intervention. The AD8 Dementia Screening Interview (AD8) detects subtle cognitive and functional changes, yet its broader associations with health and wellbeing among Chinese-speaking older adults remain underexplored. MethodsA cross-sectional study was conducted with 144 community-dwelling Chinese older adults (mean age 73.1 years; 81.3% female). Participants completed sociodemographic, health, functional, and psychosocial measures, including the AD8 and the Geriatric Depression Scale (GDS-15). Exploratory Factor Analysis (EFA) assessed the dimensionality of the AD8, and binary logistic regression examined associations between AD8 items and demographic, health, functional, and psychosocial outcomes. ResultsChronic disease was prevalent (68.1 percent), and 13.2 percent reported a mental health disorder. EFA identified three domains: memory impairment, executive and interest decline, and functional recall difficulties, explaining 61.7 percent of the variance. Logistic regression showed predictive roles for judgment problems (AD8_1), repetition (AD8_3), financial difficulties (AD8_6), tool-use difficulties (AD8_4), and daily memory problems (AD8_8). Financial and executive difficulties were associated with age and mobility challenges, while repetition predicted psychological disorders and hopelessness. Judgment problems were linked to lower life satisfaction and happiness but greater helplessness. Worthlessness was predicted by financial, tool-use, and memory difficulties, whereas intact temporal recall (AD8_5) was protective. Several outcomes including boredom, low energy, and staying home were not significant. ConclusionDistinct AD8 items predicted vulnerabilities across physical, psychological, and social domains. Findings highlight the multidimensional value of the AD8 as a culturally relevant screening and risk stratification tool for community-based assessments of Chinese older adults. Summary Statement Implications for PracticeO_ST_ABSWhat does this research add to existing knowledge in gerontology?C_ST_ABSThis study shows that specific AD8 items identify early multidimensional vulnerability among community-dwelling Chinese-speaking older adults. Difficulties with judgment, repetition, financial management, tool use, and daily memory were associated with functional limitations and psychosocial distress, extending the AD8 beyond dementia screening alone. The identification of three AD8 domains supports a broader understanding of early cognitive change as involving cognitive, functional, and emotional processes. The findings contribute culturally specific evidence from an under-researched population in gerontological research. What are the implications of this new knowledge for nursing care with older people?For nursing practice, the AD8 provides a brief, feasible tool to support holistic assessment in community and aged care settings. Key AD8 indicators can guide nurses in identifying older people at risk of functional decline and emotional vulnerability, enabling earlier, person-centred interventions. The findings highlight the importance of culturally and linguistically appropriate assessment when caring for diverse ageing populations. How could the findings be used to influence policy or practice or research or education?The results support integrating brief cognitive screening into routine nursing assessments and community-based aged care services to promote early identification and ageing in place. Nursing education should emphasise interpreting cognitive screening within psychosocial and cultural contexts. Longitudinal research is needed to assess intervention effectiveness. Key Points[tpltrtarr] Early cognitive changes matter for older Chinese-speaking adults, because difficulties with judgment, repetition, financial management, and tool use (AD8 domains) were consistently linked to poorer functional and psychosocial outcomes. [tpltrtarr]Beyond dementia screening, the AD8 proved useful for detecting vulnerabilities in wellbeing and daily functioning, extending its role beyond diagnostic sensitivity. [tpltrtarr]A cultural focus is vital, as this study is among the first to examine AD8 associations in older Chinese-speaking adults, underscoring the need for culturally tailored screening. [tpltrtarr]The psychosocial impact of cognitive changes was evident, with strong associations to helplessness, worthlessness, and reduced life satisfaction, reinforcing the overlap between cognitive and emotional health. [tpltrtarr]In practice, integrating AD8 screening into community and primary care could help identify at-risk individuals early and support targeted interventions in culturally and linguistically diverse populations.

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Sleeping with One Eye Open: Lived Experiences of Informal Caregivers Regarding Nighttime Agitation in People with Dementia

Flisar, A.; Van Den Bossche, M.; Coppens, E.; Van Audenhove, C.; Dezutter, J.

2026-03-30 psychiatry and clinical psychology 10.64898/2026.03.27.26349496 medRxiv
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Nighttime agitation (NA) is a prevalent and challenging phenomenon affecting people with dementia (PwD), often resulting in premature institutionalization. Yet, informal caregivers' perspectives on this phenomenon remain underexplored. We conducted 15 in-depth interviews with informal caregivers to gain insight into their experiences and reactions to NA. Thematic analysis identified seven sub-themes related to carers' experience and eight sub-themes concerning their reactions. These themes emerged across three levels, namely, PwD, informal caregiver and the environment. Most phenomena occurred at a dyadic level between PwD and informal caregiver, highlighting the potential of interventions targeting dyadic coping. Informal caregivers feel insufficiently supported when sleep disturbances co-occur with NA. They primarily rely on self-initiated strategies and learn by experience. Caregivers mention the need for more advanced knowledge and skills in reacting to co-occurrence of sleep disturbances with NA or systemic support in terms of dealing with emergencies. Caregivers also reflect extensively on the impact of challenging behaviors during the night on their mental and physical well-being. Notably, no non-pharmacological interventions for NA adequately address the themes identified in this study, highlighting the urgent need for integrative approaches and recognition of caregiver wellbeing as a core outcome, not a secondary consideration in interventions.

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When Care Depends on the Caregiver: Lived Experiences of Latino Families Navigating Dementia Care Pathways

Mora Pinzon, M. C.; Pasqualini, R.; Navarro, V.; Rosales, M. d. C.; Franzese, O.; Perales-Puchalt, J.

2026-04-02 geriatric medicine 10.64898/2026.03.29.26349413 medRxiv
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Introduction. Latino families shoulder a disproportionate share of dementia care in the United States, yet encounter multilayered barriers that shape access, timeliness, and quality. This study explores the experiences of Latino care partners, focusing on how system-level, cultural, and linguistic factors shape dementia care. Methods. We conducted a qualitative study using semi-structured interviews with care partners of Latino individuals living with Alzheimer's disease and related dementias (ADRD). Interviews were conducted by phone or videoconference by a bilingual interviewer, and the interviews were recorded and transcribed verbatim. Data was analyzed using reflexive thematic analysis. Results. Twenty-three participants were recruited. Two meta-themes captured participants' experiences. (1) Mismatch Between the Healthcare System and the Lived Realities of Latino Families Affected by Dementia, which included three subthemes: a) Linguistic barriers that referred to the quality and dialect fit (over-literal jargon, unfamiliar regional vocabulary, poor adaptation to literacy); b) Cultural misfit, were dementia-care programs were not culturally or linguistically appropriate, or programs where cultural norms were disregarded; and c) Structural and systemic barriers, such as communication failures (e.g. voicemail loops, no responsiveness) and long waits/fragmented pathways that broke clinical momentum (e.g. months to a year for specialty appointment). The second theme was: The Central Role of the Latino Caregiver in Navigating Dementia Care, where, in the absence of pathway ownership, care partners served as navigators, interpreters, coordinators, and safety monitors, while also bearing the emotional and financial strain. Discussion: The narratives from care partners reveal specific mechanisms (e.g., caregiver hyper-advocacy and "maze-like" coordination failures) that, if addressed, can guide intervention design and policy aimed at redistributing coordination back to the system and improving outcomes for Latino families.

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Explainable AI for Frailty and Fall Risk Prediction in Older Adults

Nobrega, T.; Santos, T.; Anjos, H.; Gomes, B.; Cunha, F.; Oliveira, P.; Baptista, R.; Pizarro, A.; Mota, J.; Goncalves, D. M.; Henriques, R.; Costa, R. S.

2026-03-22 health informatics 10.64898/2026.03.13.26347338 medRxiv
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Frailty is a geriatric syndrome that reflects a state of increased vulnerability to endogenous and exogenous stressors, exposing individuals to a higher risk of premature death and adverse health outcomes. This work aims at identifying new determinants of frailty and improving screening tools for less studied clinical endpoints. To this end, we analyze a novel cohort provided by the Camara Municipal de Famalicao, comprising 2,862 participants and 6,855 observations across up to four assessment moments, and spanning sociodemographics, anthropometry, functional tests, cognitive assessments, quality of life, and fall history. We combine unsupervised clustering to explore heterogeneity with supervised prediction for falls, hospitalization, and handgrip strength, using explainability approaches to connect model outputs to clinically meaningful patterns. Outcome-agnostic clustering separates functional profiles ranging from robust to vulnerable that align a posteriori with different fall burdens, while outcome-aware clustering further identifies a high-risk subgroup characterized by poorer mobility, endurance and greater reliance on mobility assistance. Supervised models achieve moderate and consistent discrimination for fall prediction (AUROC{approx} 0.66-0.68), and explainability approaches consistently emphasize key drivers including handgrip strength, self-report assessments, and other results from functional tests. Handgrip regression attains MAE{approx} 3.6 kg (R2{approx} 0.49), while a dedicated CatBoost sarcopenia classifier improves detection (AUROC = 0.798, recall = 0.792) at the cost of low precision, consistent with screening-oriented use. Overall, the results support the feasibility of explainable AI for actionable risk stratification in community assessments, while highlighting constraints related to missingness, class imbalance, and selection bias toward an active cohort.

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Frailty progression following severe infections in adults aged 65 years and above in US and England: two matched cohort studies

Asare, K.; Mansfield, K. E.; Gore-Langton, G. R.; Cadogan, S. L.; Barry, E.; Keogh, R.; Lo Re, V.; Rodriguez-Barradas, M. C.; Justice, A. C.; Rentsch, C. T.; Warren-Gash, C.

2026-03-15 epidemiology 10.64898/2026.03.13.26348319 medRxiv
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BackgroundWe investigated frailty progression after severe infections in adults ([≥]65 years) in the US and England. MethodsWe conducted parallel matched cohort studies using: US Veterans Aging Cohort Study (VACS-National, 2008-2019; median age 74 years; 98% male); and English Clinical Practice Research Datalink (2006-2019; median age 76 years; 45% male). Adults hospitalised primarily for infection (i.e., severe infection) were matched in calendar date order to individuals without severe infection on age, sex, care site, and US only, plus race and ethnicity. We measured frailty using VACS Index 2{middle dot}0 (US) and Electronic Frailty Index (eFI; England). We estimated annual conditional mean frailty differences between adults with versus without severe infection using linear regression adjusting for baseline frailty, demographics, lifestyle factors, infection history, and US only, comorbidities. ResultsMean baseline frailty was higher in those with severe infection than those without (US: 57 v 48; England: 0{middle dot}17 v 0{middle dot}12). At Year 1, adjusted mean frailty was higher among adults with severe infections than those without (US: VACS Index +2{middle dot}0, 95% CI 1{middle dot}9-2{middle dot}0; England: eFI +0{middle dot}005, 95% CI 0{middle dot}005-0{middle dot}006). At Years 2-5, adjusted mean frailty remained higher after severe infection; however, compared to Year 1, differences were smaller in US, and larger in England. Effects varied by infection type (strongest for lower respiratory tract infections, meningoencephalitis (UK only), urinary tract infections, and sepsis). InterpretationIndividuals with severe infections had higher frailty at baseline and follow up than those without. Preventing both frailty and infections is important for improving health in older age. FundingWellcome Research in contextO_ST_ABSEvidence before this studyC_ST_ABSWe searched PubMed (inception to October 27, 2025), for published articles evaluating the association between infections and frailty, with no language restrictions. We used the search terms [(infection OR infectious) AND (frailty OR frail)]. We found fifteen observational studies investigating associations between individual infections (including: HIV, cytomegalovirus, SARS-CoV-2, acute respiratory infection, urinary tract infection, and influenza) and frailty in adults. Frailty measures varied: eight studies used Frieds phenotype index, six used versions of the cumulative deficit index (i.e., Edmonton Frail Scale, FRAIL-NH Scale, Hospital Frailty Risk Score, Clinical Frailty Score, Veterans Affairs Frailty Index, Vulnerable Elders Survey-13), and one study used the Timed Up and Go Test. Results from identified studies were mixed, with nearly half (7/15) reporting a positive association between the infection studied and frailty, and the remaining eight finding no evidence of association. In cross-sectional analyses, HIV, SARS-CoV-2, cytomegalovirus, and urinary tract infection, were each associated with higher mean frailty scores or frailty prevalence. In longitudinal analysis, hospitalisation for acute respiratory infection was followed by higher mean hospital frailty risk scores two years post-discharge. SARS-CoV-2 infection was associated with early onset (i.e., higher hazard) of frailty over three years follow-up. However, other studies found no association between HIV, SARS-CoV-2, acute respiratory infection and influenza, and frailty prevalence, incidence, or transition between frailty states. These mixed findings may reflect methodological differences between the studies, including variation in frailty measures, and study limitations. Frailty exists along a continuum of vulnerability, and progression after infection may be an important outcome, yet current evidence is scarce. It remains unclear whether severe infections or different types of infection, are associated with faster frailty deterioration. Similarly, it is uncertain whether post-infection frailty risk varies by pathogen (bacterial, viral, parasitic, fungal), infection type (sepsis, urinary tract infection, skin and soft tissue infection, meningitis/encephalitis, lower respiratory tract, gastroenteritis), or by age, sex, social deprivation, and pre-existing comorbidities. Added value of this studyOur study compared frailty progression over a five-year period between adults aged [≥]65 years with severe infection (hospitalisation primarily due to infection) versus comparators without severe infection. We found higher baseline frailty at severe infection onset than in matched comparators. We saw evidence of increased frailty progression over time in people following severe infections compared to those without, however, these differences were small. We also saw higher risk of worsening frailty progression in older adults and those with dementia. Further, worsening frailty progression varied by infection type (strongest for lower respiratory tract infections, meningoencephalitis (UK only), urinary tract infections, and sepsis). Implications of all the available evidenceOur findings underscore the importance of both frailty and infection prevention in improving health in older age. Additional studies are required to explore other wider life-course influences on frailty, to guide the development of comprehensive preventive strategies.

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Mental healthcare utilisation and costs before and after dementia diagnosis: evidence from electronic health records

Eaglestone, G. L.; stoner, c.; pacella, r.; McCrone, P.

2026-06-03 epidemiology 10.64898/2026.06.02.26354695 medRxiv
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Objectives: To describe secondary mental healthcare utilisation and associated costs among patients diagnosed with dementia or mild cognitive impairment (MCI). Design: Retrospective cohort study using routinely collected electronic health record data. Setting: Secondary mental healthcare services within a large NHS mental health provider in South London, UK. Participants: Adults aged 18 years or older with a recorded diagnosis of dementia or MCI between 1 January 2010 and 31 December 2020. Patients surviving less than one year after diagnosis were excluded. The final cohort comprised 16,081 individuals. Primary and secondary outcome measures: Service utilisation and NHS mental health service costs during the 12 months before and after diagnosis, including inpatient, outpatient and memory clinic contacts. Results: The proportion of patients with at least one recorded mental health service contact declined from 91% in the 12 months before diagnosis to 69% after diagnosis. Among service users, mean NHS mental health costs increased from GBP 1,497 to GBP 2,177 per person following diagnosis (mean increase GBP 680; p<0.001), driven primarily by inpatient care. Dementia diagnosis, younger age, male gender, living alone, greater cognitive impairment and higher clinical symptom burden were independently associated with higher costs. Ethnic differences in service use and costs were also observed. Conclusions: Although overall service engagement declined following diagnosis, costs increased among those continuing to access care, indicating greater intensity of service use. Understanding patterns of secondary mental healthcare utilisation and associated costs may help inform planning and resource allocation within dementia services.

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Delirium and Increased Risk of Developing Dementia: An Emulated Target Trial Analysis

Rathmell, C. S.; Sun, H.; Ge, W.; Magdamo, C.; Das, S.; Moura, L. M. V. R.; Zafar, S. F.; Akeju, O.; Mukherji, S. S.; Shaw, K. M.; Westover, M. B.

2026-05-14 neurology 10.64898/2026.05.11.26352925 medRxiv
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BackgroundMultiple studies suggest bidirectional links between delirium and Alzheimers Disease and Related Dementias (ADRD). Although they establish a strong association between delirium and subsequent ADRD, it has not been explored using statistical causal inference which makes the best use of observational data to minimize biases. MethodsWe conducted an emulated clinical trial to estimate the effect of experiencing delirium during hospitalization between April 2017 and September 2019 on the cumulative incidence of ADRD over two years following hospital admission in patients 65 and older. The emulated trial used observational data from individuals in the Mass General Brigham Electronic Medical Record (EMR). We carried out statistical causal survival analysis using methods that adjust for confounding, censoring, competing risks, and immortal-time bias, including inverse propensity weighting (IPW) and g-formula approaches. ResultsOf the 6029 patients hospitalized in this time frame who were 65 or older with evidence of a PCP in the EMR, 5901 were included in the analysis based on no history of dementia diagnosis or medications 12 months prior to admission. At two years post-admission, the adjusted cumulative incidence of ADRD in individuals who did not experience delirium was 7.6% (95% Confidence Interval [CI] 4.0-12.1%) while it was 20.2% (95% CI 13.2-27.9%) for those who did experience delirium when calculated using the IPW method. ConclusionsOur emulated trial results argue for a strong association between delirium during hospitalization and the risk of developing ADRD in the two years following hospital admission in individuals 65 and older. Key PointsO_ST_ABSQuestionC_ST_ABSWe sought to answer whether statistical causal inference would show the same association between delirium and the onset of dementia in the two years following hospitalization. FindingsOur emulated trial results argue for a strong association between delirium during hospitalization and the risk of developing ADRD in the two years following hospital admission in individuals 65 and older. MeaningThe implications of demonstrating this relationship underscore the importance of delirium-mitigating interventions for long-term cognitive outcomes.

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Interest in and feasibility of a dementia prevention program among community-dwelling older adults: a questionnaire survey

Kouzuki, M.; Tazumi, H.; Nakada, N.

2026-03-24 geriatric medicine 10.64898/2026.03.22.26349026 medRxiv
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Background: Evidence regarding dementia prevention strategies has been accumulating. However, disseminating research findings to the public is often difficult, and addressing the evidence-practice gap presents an important challenge. This study examined potential strategies to support sustained engagement in dementia prevention activities. Participants and Setting: Members of senior citizens' clubs in Tottori Prefecture, Japan. Methods: This questionnaire survey collected data on basic demographics, frailty, and subjective cognitive decline (SCD). It also included questions on awareness of the Tottori Method Dementia Prevention Program, interest in experiencing the program if an instructor was dispatched, and the feasibility of engaging in the program through internet-based delivery or printed materials. Results: A total of 9,506 respondents were included in the analysis. Awareness of the dementia prevention program was 11.9%. Overall, 50.4% of the respondents registered a desire to try the program if an instructor was dispatched. The highest proportion of respondents (50.5%) reported willingness to engage in the program if materials summarizing activities that could be completed in approximately 10 min were provided. However, both frailty and SCD were associated with a lower interest in these dementia prevention activities (adjusted odd ratio [95% confidence interval] = 0.77 [0.67-0.89] and 0.86 [0.79-0.95], respectively). Conclusions: To promote sustained engagement in dementia prevention activities, opportunities to experience the program and activities that can be completed in a short time should be availed. However, disseminating research findings to the public remains challenging, and individuals at a higher risk of health problems may be less interested in dementia prevention. Proactive outreach strategies targeting high-risk individuals may be necessary to effectively disseminate the information.

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Differences in Family Dementia Caregiver Needs and Preferences Across the Lifespan

Gallagher, V.; Sheehan, C.; Manning, C.; Shaffer, K.

2026-05-21 neurology 10.64898/2026.05.15.26353316 medRxiv
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Background The majority of family dementia caregivers in the United States (U.S.) are now young and middleaged adults. However, little research has been conducted to understand how caregiver needs and preferences for support differ depending on their phase of adulthood. This study evaluated differences in mental health, caregiving readiness, desired supports, and intervention preferences among early (<46 years), middle (46 to 60 years), and late (>60 years) adulthood dementia caregivers. Methods A cross sectional survey was conducted with 202 family dementia caregivers aged 22 to 88. Caregivers completed validated measures of burden, anxiety, depression, well being, time pressure, dementia knowledge, caregiving preparedness, and positive aspects of caregiving. Desired supports and preferences for intervention format, program type, and frequency were assessed. Analyses examined both categorical adulthood phase and continuous age associations with caregiver outcomes, with alpha thresholds of p<.05. Results Early adulthood caregivers self reported higher anxiety symptoms (relative to late adulthood caregivers) and perceived time pressure (relative to middle and late adulthood caregivers). Relative to late adulthood caregivers only, early adulthood caregivers more frequently endorsed desired support for supplemental care and safety tools for the person with dementia, as well as willingness to engage in individual counseling and automated, digital supports. Relative to both middle adulthood and late adulthood caregivers, they also more frequently expressed desired support for their own mental health. Conclusions Dementia caregiving in early adulthood is associated with distinct psychological and practical support needs, suggesting life course informed interventions may enhance relevance and engagement.

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Dementia and End-of-Life Shared Decision-Making Among Older US Adults

Xie, Z.; Hong, Y.-R.; Armstrong, M. J.; Wang, X.; Jacobs, M.

2026-03-30 palliative medicine 10.64898/2026.03.27.26349555 medRxiv
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Introduction: End of life decision making poses unique challenges for individuals with dementia and their family caregivers as cognitive decline shifts decision making responsibility to surrogates. Methods: Using 2010 to 2022 Health and Retirement Study (HRS) exit interview data, we compared advance directive completion, decision making needs near death, involvement of others in decision making, and concordance between expressed preferences and care received among decedents with and without dementia. Analyses incorporated HRS exit interview sampling weights, primary sampling units, and strata to account for the complex multistage probability design of HRS and produce nationally representative estimates of U.S. older adult decedents (50 years or older). Weighted descriptive statistics and design adjusted Wald tests were used to compare groups. Results: Among 5,389 decedents, 1,010 (weighted 17.7%) had dementia prior to death. Decedents with dementia were more likely to have completed advance directives than those without dementia (81.3% vs. 69.1%, p<.001). However, they also had significantly higher decision making needs in the final days of life (54.3% vs. 47.2%, p<.001). Children or grandchildren were more frequently involved in care decisions for decedents with dementia (63.9% vs. 45.6%, p<.001). Despite differences in decision making processes, most decedents in both groups expressed preferences for comfort focused care, and preference care concordance exceeded 90% in both groups. Conclusions: Findings suggested that dementia reshaped the structure and intensity of the shared decision making process by increasing surrogate engagement and decisional demands, underscoring the importance of early advance care planning and structured support for family caregivers to sustain goal concordant care.

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Japanese version of the Family Stigma Instrument for informal caregivers of people with dementia

Noguchi, T.; Bhatt, J.; Komatsu, A.; Watanabe, R.

2026-03-20 psychiatry and clinical psychology 10.64898/2026.03.12.26348133 medRxiv
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INTRODUCTION: Overcoming dementia-related stigma is a global challenge, but tools to assess stigma among family caregivers of people living with dementia remain limited. This study examined the validity and reliability of the Japanese version of the Family Stigma Instrument for family caregivers of people living with dementia (J-FAMSI-dementia), originally developed in the United Kingdom. METHODS: A total of 372 informal caregivers aged 18 to 79 years of family members living with dementia completed an internet survey. The J-FAMSI-dementia comprises five subscales (stigma by association; perceived, affective, and behavioral affiliate stigma; and positive aspects of caregiving), developed through forward and back translations. RESULTS: Confirmatory factor analysis supported an acceptable five-factor model. All subscales showed high internal consistency and moderate to good test-retest reliability. Correlations with dementia attitude, caregiving burden, and depressive symptoms supported construct validity. DISCUSSION: The J-FAMSI-dementia demonstrated acceptable validity and reliability and may help identify dementia-related stigma among family caregivers.

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Advance Care Planning Documentation Completeness and End-of-Life Care: Trends and Associations Among U.S. Older Adults

Xie, Z.; Jacobs, M. M.; Liang, J.; Patel, B.; Hong, Y.-R.

2026-04-07 geriatric medicine 10.64898/2026.04.07.26350311 medRxiv
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Background: Advance care planning (ACP) documentation, including living wills and durable power of attorney (DPOA), is intended to support goal concordant end of life care. However, it is unknown if comprehensive documentation confers additional benefits, and how these associations vary across clinical contexts. Methods: We used 2010 to 2022 Health and Retirement Study exit interview data to examine associations between ACP documentation and end of life care among U.S. adults aged 50 years and older. Documentation was categorized as none, one document (living will or DPOA), or two documents (both). Outcomes included intensive care unit (ICU) use, life sustaining treatment, hospice enrollment, and out-of-hospital death. Modified Poisson regression models were used to estimate adjusted risk ratios (aRRs), and temporal trends in documentation were assessed using joinpoint regression. Results: Among 5,622 decedents representing 23.2 million individuals, 42.7% had two documents and 28.9% had none, documentation increased substantially around 2014. Compared with no documentation, having any documentation was associated with lower likelihood of life-sustaining treatment (aRR=0.85, 95% CI: 0.74 to 0.98) and higher likelihood of hospice enrollment (aRR=1.43, 95% CI: 1.28 to 1.60) and out-of-hospital death (aRR=1.11, 95% CI: 1.06 to 1.18), but not ICU use. Having two documents showed similar patterns, with modest differences compared with one document after adjustment. Associations were stronger among decedents with expected death and attenuated among those with unexpected death. Conclusions: Comprehensive ACP documentation is associated with less aggressive end of life care and greater hospice use, though the incremental benefits of two documents are modest. Findings highlight the importance of documentation within care planning processes and the clinical context.

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2024/25 end-of-season KP.2 vaccine effectiveness against COVID-19 hospitalization in older adults: a test-negative study in Quebec, Canada

Carazo, S.; Skowronski, D. M.; Sauvageau, C.; Talbot, D.; Racine, E.; Brousseau, N. M.

2026-04-04 infectious diseases 10.64898/2026.04.02.26350050 medRxiv
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We evaluated 2024/25 KP.2 vaccine effectiveness (VE) against COVID-19 hospitalization among adults >60 years old eligible for publicly-funded vaccination during fall and/or spring campaigns in the province of Quebec, Canada. We included Quebec residents tested for COVID-19-compatible symptoms in an acute-care hospital between October 13, 2024 (epi-week 2024-42) and August 23, 2025 (2025-34), linking vaccine, hospital, chronic diseases and laboratory administrative records to assess VE through test-negative design. We compared the odds of being COVID-19 test-positive versus test-negative among vaccinated versus non-vaccinated participants, adjusting for sex, age, comorbidities, place of residence, and epidemiological week. Overall, 49,949 (43%) participants were vaccinated. Over an analysis period spanning up to ten months, including median time since vaccination of 16 weeks (interquartile range 9-24 weeks), VE was 34% overall, declining from 43% <8 weeks to negligible by the 32nd week post-vaccination. Findings confirm meaningful but short-lived COVID-19 vaccine protection against hospitalization in older adults.

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Dementia and Frailty Impact Postoperative Care Trajectories and Burden among Older Adults Undergoing Radical Cystectomy for Bladder Cancer

Ernandez, J.; Xiang, L.; Adler, R.; Hsu, J.; Shah, S. K.; Kim, D.; Gershman, B.; Mossanen, M.; Weissman, J. S.

2026-06-06 urology 10.64898/2026.06.04.26354768 medRxiv
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OBJECTIVE: Bladder cancer (BC) is predominantly a disease of older, comorbid adults, and radical cystectomy (RC), which is the gold standard treatment, carries considerable morbidity. We sought to determine the impact of baseline dementia and frailty on the care trajectory beyond the immediate postoperative period. We hypothesized that frail patients and those with dementia undergoing RC for BC will have poorer care trajectories. METHODS AND MATERIALS: We identified Medicare beneficiaries [&ge;] 66 years old who underwent RC for BC in 2017 with 12 months of pre- and post-RC enrollment. Frailty and dementia were characterized using validated, claims-based measures. Associations between baseline frailty and dementia with postoperative care trajectory outcomes were determined using Fine-Gray competing risk models. RESULTS: We identified 3,600 beneficiaries of whom 11.6% were frail and 3.4% met criteria for dementia. Patients with dementia were more likely to be frail, comorbid, and not receive standard-of-care neoadjuvant chemotherapy. Frailty was independently associated with [&ge;] 2 transitions in care level after index discharge from RC and skilled nursing facility (SNF) admissions within 1 year of RC, exposure to intensive post-RC interventions, including dialysis and feeding tube placement, and poorer survival. Dementia remained associated with SNF admissions regardless of frailty level. CONCLUSIONS: Among a contemporary cohort of older adults undergoing RC for BC, preoperative dementia and frailty were independently associated with poorer care trajectory beyond the immediate postoperative period after RC. Our work highlights a role for preoperative geriatric assessment in identifying and optimizing patients at greatest risk.

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Understanding the Impact of Heatwaves on UK Care Homes: A National Survey of Staff Experiences, Challenges, and Adaptation Strategies

Blount, H.; Ward, J.; James, P. A.; Worsley, P. R.; Filingeri, D.; Koch Esteves, N.

2026-03-25 occupational and environmental health 10.64898/2026.03.24.26349157 medRxiv
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Introduction. Climate change is increasing the frequency and intensity of heatwaves, creating critical challenges for social care settings where both staff and residents face heightened heat related vulnerability. This study examined the impact of heatwaves on UK care homes using a national survey of staff experiences, challenges, and adaptation strategies. Methods. Care home staff (N = 225) in managerial (N = 88) and caregiving roles (N = 137) completed an online survey investigating staff perceptions of heatwaves impact on thermal comfort, health and vulnerability of themselves and residents, alongside current heat resilience strategies and the barriers to their implementation. Results. Two thirds (66%) of the surveyed staff complained of being too hot three or more times per day resulting in a perceived impact on their ability to perform tasks (90%) and on residents' comfort and health (92%). Staff demonstrated strong awareness of older adults' heightened heat vulnerability (95%) and signs of heat illness (87%). Thematic analysis identified five key barriers to providing effective cooling: funding limitations, inadequate equipment, building constraints, staffing pressures, and individual resident needs; and four priority improvement areas: increased access to cooling equipment, improved temperature control, strengthened strategy and policy, and support for staff needs. Conclusions. Heatwaves place considerable strain on care homes, challenging staff capacity to maintain comfortable thermal conditions, despite good knowledge of heat risks. Financial, infrastructural, and staffing constraints limit effective heat resilience practices. Evaluating and implementing affordable, accessible, and context appropriate cooling strategies will be essential to protect both residents and staff as extreme heat events become more frequent.

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Decision-making in patients with ALS: experiences and implications for decision support

Nagase, M.; Hino, K.; Sakamoto, A.; Seo, M.

2026-04-24 nursing 10.64898/2026.04.22.26351518 medRxiv
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Patients with amyotrophic lateral sclerosis (ALS) face critical decisions regarding life-sustaining treatments, such as invasive mechanical ventilation and percutaneous endoscopic gastrostomy. Advance care planning and shared decision-making are standard supportive frameworks but they often fail to account for structural pressures like progressive decline, shifting patient values, and fear of becoming a burden that may influence decision-making. This study explores how patients with ALS interpret ventilator and care options amid progressive physical decline, thereby reconsidering approaches to decision support. Using a qualitative descriptive design, the researcher (a nurse/sociologist) conducted 2-3 hour home interviews with five purposively sampled patients with ALS. Data, including eye-tracking-aided responses, were analysed via Sandelowskis framework. Rigour was ensured through team-based triangulation, independent coding by two researchers, and a reflexive audit trail. Subjective narratives were prioritised without medical record cross-referencing to capture patients experiences. Four categories emerged: (1) Rewriting clinical prognosis into a narrative of exploration via peer models, where meeting active ventilator users transformed future perceptions; (2) The conflict between securing care infrastructure and the burden on family, which greatly influenced the will to survive; (3) Existential fluctuation, where patients intentions shifted with daily fulfilment and family events; and (4) Governance of the body via pre-emptive technology use and training carers as physical extensions. Findings showed decision-making was a multi-layered process redefining lifes meaning within social resources. This necessitate shifting from independent to relational autonomy, where agency relies on care infrastructure, not physical ability. Treatment choice is a dynamic exploration requiring narrative companions to support existential fluctuations. Professionals must coordinate environments to reduce patient indebtedness. Limitations include the small, resource-advantaged sample (N = 5) and reliance on subjective narratives without medical record verification. Living with ALS means governing a new self through relational support and continuous dialogue.

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Aging in Place - A mixed methods study protocol of how care providers in Sweden organise and adapt granted home care services to the preferences and needs of people living with dementia

Larsson, A. T.; Olaison, A.; Hyden, L.-C.; Antar, M.; Heijkants, C.; Lindberg, J.; Nordmark, S.; Wallroth, V.; Kelfve, S.

2026-04-30 health systems and quality improvement 10.64898/2026.04.29.26352070 medRxiv
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The project Aging in Place applies a novel approach to investigate how social care services in Sweden are adapted to preferences and needs of older persons living at home with dementia (including their partners). The project covers the process that starts when a person is granted to receive services, which are communicated to a care provider - who should organize the services - and finally reach the receiving older person. This approach differs from previous research on elder care, which has focused either on the purchaser or the provider side of Swedish municipal elder care in the purchaser-provider model Sweden adopted since the mid-1990s. The project focuses on: 1) what specific social care services older persons living at home with dementia are granted; if a dementia diagnosis is needed for some services; and the differences between municipalities; 2) how care providers organize granted services and adapt them to people living with dementia; including differences between municipalities and care provider units; 3) how care recipients living with dementia (including co-habiting partners) experience and influence the receiving of services. The ambition is to generate both generalizable knowledge about social care services for people living with dementia in Sweden, including differences between municipalities and care providers, and in-depth, exploratory knowledge about how care providers organise services and how these services are received by care recipients. The project encompasses an innovative, and necessary, combination of methods and materials: register studies, web surveys, as well as observations and interviews. The project will provide important, elemental, knowledge on Swedish dementia- and eldercare. This knowledge is needed as a basis for further studies and as a contribution to discussions on how future social care can be developed to ensure people living with dementia, and their partners, equality, participation, and dignity in later life.

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Assessment of safe wheeled walker use in frail older adults: Development of a video-based rating instrument

Leonhardt, R.; Lindemann, U.; Schneider, M.; Rapp, K.; Klenk, J.

2026-06-08 geriatric medicine 10.64898/2026.06.04.26354904 medRxiv
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Background: Wheeled walkers can improve safety during walking, but improper use may increase fall risk among frail older adults. No suitable tool exists to assess safe indoor wheeled walker use in this population. This study aimed to develop and validate a video-based expert assessment tool. Methods: Based on the literature and expert consensus, seven problematic indoor situations were identified, and an assessment tool with five safety criteria per situation was developed (maximum score = 35). Fifty participants (mean age 83.9 years, 64% women) from a geriatric rehabilitation clinic and a nursing home were video-recorded while using a rollator. Expert ratings were compared with nursing staff ratings, self-ratings, and the Timed Up and Go test to evaluate validity. Intra- and inter-rater reliability were determined from independent ratings by two physiotherapists and a repeated expert rating after seven days. Sensitivity to change was assessed after two weeks of rehabilitation, and feasibility by the time required for assessment. Results: The expert score of rater 1 at baseline was 28.5 points, and assessment required a mean of 17.5 minutes. Intra-rater reliability was excellent (ICC = 0.98) and inter-rater reliability was good (ICC = 0.80). Validity analyses showed the strongest association with nursing staff assessments (r = 0.74) and a moderate association with the Timed Up and Go test (r = -0.45). After two weeks, patients improved by an average of 2.38 points (8.4% of baseline score). Conclusions: The new instrument demonstrated high reliability, acceptable validity, sensitivity to change, and good feasibility for assessing safe wheeled walker use in frail older adults. Trial registration number and date of registration: DRKS00038358, 07/11/2025